Tuesday, October 23, 2012

We spent the past 2 days in Detroit, for a follow up EEG and appointments with Will's neurosurgeon and neurologist. We have been asking everyone to pray for this day, in hopes that the follow up EEG would come back clean and we could breathe a sigh of relief that the developmental gains we are seeing for Will are likely to remain. Will had a 2 hour EEG and meeting with his neurosurgeon yesterday, and we met with his neurologist, Dr. C, today. With our hearts in our throats, we listened to Dr. C tell us that Will's EEG looked good, and showed absolutely NO SPIKING and NO SEIZURE ACTIVITY!!! We have been crying happy tears ever since.

It was such a surreal feeling for us to hear this news. We sat there and listened to Dr. C tell us what he saw on the EEG, answered his questions about how Will is doing, discussed our questions and concerns, and all along it felt like we were in a dream. For almost 2 years we have lived and breathed a war - Will's war - on Infantile Spasms. We've tried or considered every treatment available. All of the appointments with countless doctors, blood draws, MRI's, PET scans, EEG's, Neuro-Psych evaluations, therapy sessions, the many awful drugs, months on the Ketogenic diet, the first surgery, and now the second surgery. After living through all of these things, to FINALLY hear a doctor say "it looks good" was something that we hoped to hear, but when he actually said it, it took a while for his words to sink in.

We discussed Will's current abilities, and how they differ from his abilities before the surgery 6 weeks ago. At that time, he was able to say only 5 words, and even then he would really only say them when prompted. Now, he is able to say over 100 words - 6 weeks later! He is even starting to string 2 words together. He is learning his animal sounds. He knows his numbers 1-10. Will's cognitive abilities and his language abilities have exploded, much to our delight. We knew something good is going on in our little Buster Bean's brain, regardless of what the EEG showed. Now, although there are never guarantees, we have good reason to believe that this will remain, and that Will is likely to continue to progress developmentally and do well into the future. Hooray for Will!

Sunday, October 7, 2012

Today, Sunday, October 7th, marks one month since the date of Will's brain surgery. When we were in Detroit, prior to the surgery, Will's neurologist told us that he was very optimistic that this second brain surgery would be a tremendous benefit to Will. Dr. C said that he thought we will see great things from Will after the surgery.

Of course, after Will's first brain surgery in November of 2011, we saw Will excel and do a lot of exciting things, but then we saw those gains gradually fade away. In January of this year, we remember posting on this blog that Will had words, and we listed the words he could say. Within a month beginning in February 2011, we watched Will slowly lose the gains that he had worked so hard to make, until he was no longer saying any words at all, and then we were crushed when he had a seizure.

It is because of our past experiences after his first surgery that we have been reluctant to post how Will is doing, as we are terrified that the improvements that we are seeing in him are temporary and might fade away again. But we are too excited, and starting to feel confident that they are not temporary. Simply put, we ARE seeing GREAT THINGS! He is doing so many things so well, it is hard to control our excitement. Quickly after we got home from the hospital, he began to mimic singing his ABC's (see video below). Now, among other things, he is giving us high-fives and saying "All right!"

As simple as it sounds, Will did not know how to reach into a bag of chips or a bowl of cereal and grab a handful and take it out. If we put a plate of food in front of him, he would either stare at it and not know what to do, or he would try to pick up all of it at once and put it all in his mouth. Eating a cookie was impossible because he couldn't fit the whole thing in his mouth and the idea of breaking it up or taking a bite was something he couldn't comprehend. The change in his eating alone since surgery has been astounding. He is now for the first time using a fork to pick up his food and put it in his mouth, one piece at a time. His self-sufficiency in eating is also allowing Kelly to actually eat her dinner before it gets cold!

Who needs physical therapy???

Aside from eating, Will's cognitive abilities have really grown by leaps and bounds. He is figuring things out the way that you would expect a child to be able to do. As he works through a problem, we can see his mind working. He figures out how to match shapes, match colors, identify Elmo in a book, and so forth. He now watches TV and he is engaged in it, rather than just staring blankly at the screen. All of these are things that we've been trying to get him to do for 3 years. Now, within 1 month of his surgery, he is doing it!

Physically, he is still adjusting to his loss of right-side peripheral vision, but it really isn't slowing him down at all. He bumps into a few things each day because he doesn't see them coming, but he is getting better all the time. He loves his trampoline, and is proving that he has his strength back when he is on this. He is now running everywhere. He has a renewed interest in all of his old toys, so we've been dragging a lot of big plastic toys up from the basement.

We are so thrilled, blessed, and thankful to be posting all of this good news. But...we still need your prayers! We have to take Will back to Detroit on October 22nd and 23rd for follow-up appointments and most importantly, for an EEG. If the EEG is clean, we definitely have reason to celebrate. If it is not clean, well...we're not even going to think about that right now. Until then, enjoy this video! Thank you all for your prayers and support!!!

Introduction

Hi, my name is Will, and I am 6 years old. I am loved very much by my parents, Dan and Kelly, my big brother Jack (age 9) and my baby brother Cole (age 2). I was diagnosed with Infantile Spasms in February of 2011. My parents created this website to keep our family and friends updated about my journey with this rare and catastrophic form of pediatric epilepsy.

After numerous treatments failed to stop the seizures (Topamax, B6 Pyridoxine, ACTH, Keppra, Vigabatrin, Depakote, and the Ketogenic Diet) doctors removed the left temporal lobe of my brain in November of 2011, which stopped all visible seizures but my development still remained stagnant. I then underwent a two stage surgery to remove my left parietal and occipital lobes in September 2012. Today, I am a walking, talking miracle and my family celebrates every seizure free day that we have been blessed with.

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